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‘R’ Words and Pinky Promises-Update on Big Prayers for Big Kevin

It has been nearly three months since I have posted an update on Kevin’s Cancer Chronicle and it isn’t because I haven’t tried. Each time I try to sit down and quantify the galaxy of swirling emotions that have somehow become part of who I am, my check engine light comes on and my cognitive gauge nears redline status and I have to shut it all down. Disclaimer: it doesn’t take a lot to redline my cognitive abilities and I have been running with my check engine light on for years. Kevin has been the one dealing with all the physical discomforts, fatigue, weight loss, sinus irrigations—his eyebrows fell out for crying out loud, yet I am the one who is one molecule of water short of my fuel rods overheating and going into complete nuclear meltdown, but that is kind of how we roll.

On May 11th we traveled back to MD Anderson to get the first of many post-treatment tests and scans. We flew out Friday morning and his first appointment was that afternoon. We arrived at Houston Hobby Airport and went to Baggage Claim to get our bags. The first bag came out right away and I unquestioningly took it and stood out of the way while Kevin waited at the carousel for the tardy bag. He grabbed it and we headed to meet our Lyft and soon were on our way to the Medical District. About 15 minutes after leaving the airport, my cell phone rings. It was the airport calling for me to return to the airport to retrieve my bag and return the one we took by mistake (heavy sigh).

Me: “Kevin, did you grab the wrong bag?”

Kevin: “I don’t know. I didn’t have my glasses on.”

Me: “Sh#t! Will you go in and swap bags?”

Kevin: “Nope. It has your name on it.”

Me: “I am going to tell them that it was your fault.”

Kevin: “I don’t care what you tell them. I am pretty sure whoever’s bag we have is pretty ticked. I will stay with the Lyft.”

Me: “Chivalry has fallen on its sword and died a cruel and brutal death.”

Kevin: “What?”

Me: “Nothing.”

Needless to say, the man waiting for me to return the suitcase with the uncanny resemblance to ours (minus the nice leather name tag on the handle with HIS name and address on it) wasn’t impressed with the striking resemblance of our bags or my humble apology. Being greeted by his gruff attitude, I momentarily wished I had riffled through his bag so I could say something snarky like, “Your prescription for Viagra is almost due for a refill” or “I see you are traveling alone, so I am assuming those lacy pink panties in the bag are yours”. But I restrained myself and smiled and took my bag and refocused on the mission ahead.

Because of the luggage snafu, we ended up heading straight to the hospital with our bags in tow and up to the 10th floor for his first of many appointments, the first being with his surgeon. She did the scope up the nose that was magnified on a big screen. I recorded the carnage, because it is phenomenal what she retrieves. I won’t post the video, because although it is fascinating, it is not for the squeamish. He did have a staph infection and got some new medicine to add to his daily regimen. She recruited him for a study related to his experience with olfactory neuroblastoma and he got her blessing for the next ninety days.

The remaining days were filled with visits to the audiologist, MRI scan, oncology dentist, eye doctor, neurologist, dietician and finally, my personal favorite the Oncology Radiologist. They were all tasked to document his “new baseline” in all the pertinent areas the radiation and/or cancer may have impacted. I seriously only came to Houston for them to tell me that the cancer was all gone and all the hell he had endured was worth it, because he was cured. Over the several days I anxiously awaited for the ‘all clear’ and with just one appointment remaining, this is all I knew for sure:

His MINOR hearing loss is low-tones and his primary hearing loss remains selective in nature.

He can see, but not well enough to get the luggage off the carousel at the airport without his cheaters.

He’s lost a lot of weight.

He has retained his mental faculties (although he forgot the paper he was supposed to turn into the neurologist and during the exam went blank on ‘as many words as you can think of that begin with the letter R), which I thought would have lowered his score, but according to Kevin, he passed with flying colors.

He can’t really smell much of anything.

His taste has returned to about 75%, but he can’t do carbonation and things don’t taste the same.

He needs to wear sunscreen to protect his skin.

He will continue to have dry mouth.

He will have to continue to irrigate his sinuses a few times a day for a long time.

I KNEW ALL OF THIS WHEN I GOT TO HOUSTON! I was slowly losing my patience and I just want someone…anyone (preferably in a white coat with a medical degree) to look me in the eyes and speak the words, “It is gone. It’s all over. Go home and be happy.”

We hit his last appointment as we were headed to the airport to go home. So, once again, we lugged our bags into the hospital. By this point my anxiety level was creeping up to meltdown level and I may have gotten a tad bit sassy with the physician’s assistant by curtly outlining that I came to Houston to get confirmation that the cancer was gone and all we have been told is that his ears work, he can see, his mouth is dry and he has passed his neurological exam with flying colors, with the exception of spontaneously regurgitating word that begin with the letter R, which MAY or MAY NOT be a side effect of the radiation, which by the way, starts with the stupid letter R; then maybe I can do that other ‘R’ word—RELAX! But CAN SOMEONE TELL ME THE TWO WORDS THAT I NEED TO HEAR, WHICH BY THE WAY BOTH START WITH THE LETTER C—CANCER and CURED?? Note: this version of my rant has been edited for explicit content , but resulted in the physician’s assistant giving Kevin a fist bump and said, “I have been doing this for twenty-five years and I have never heard anything like that in my life.”

The good news is, the MRI was NEGATIVE for evidence of cancer—the major area of concern was the lymph nodes in his neck (where this cancer likes to relocate), which were clear. HEAVY, heavy, HEAVY sigh. Thank God.

So, now what? What’s the plan? Is it gone? Are we good? Is he good? Can we go? Does he get a bumper to bumper warranty? I sort of need all of this in writing. I would settle for a confirmation of continued good health sealed with that unbreakable forever solemn sign of good faith—a pinky promise. Doctors don’t do pinky promises…they do 90 day reprieves.

We headed home on the tail of great news that there is no sign of cancer in his sinuses or the lymph nodes of his neck, with orders to return in 90 days to do it again and again in another 90 days and so-on. We come to more words that start with the letter R—RETURN and REPEAT, but for this moment and above all—RELIEVED.

We settled into our version of normal (which has never been quite normal) and there a long portions of my day, when I don’t worry about cancer. There are moments when I am so immensely thankful for his healing that I feel my faith is unshakable. But then there are times that I hear him cough or he gets up too fast and loses his balance and the waves of worry crash into me and I find myself asking several times a day, “Are you okay?” and “How are you feeling?”. I wake up and listen to him breathing in and out and try to build a fortress against this maggot of a disease taking root in a lymph node or a lung or a kidney, by willing it to be so. If only love cured cancer… If only doctors made pinky promises.

What I do have is today and I will cling to it with every hope and expectation that tomorrow he will continue to get stronger and someday this will all be behind us. Kevin may be hitched to a wife with wobbly faith, but he has been bolstered in prayers and support that surpasses anything we could have ever imagined. There are so many people that have met our needs, often before we knew what our needs were! There is not a platform big enough to express our sincere gratitude. I know that I have slipped behind on sending out thank-yous to so many and I am so sorry. Please know that we owe where Kevin is today to not just the amazing care of the doctors in Houston, but also to the outpouring of prayers, love and support of our family, friends, and community, who made his treatment possible. We are truly blessed beyond belief, which is the next best thing to a pinky promise from a cancer doctor!